Health

06a DS Registry, Research Database and Biobank–Part 1

Edward R.B. McCabe, MD, PhD, Executive Director, and Linda L. McCabe, PhD, Bioethics & Community Outreach, both with Linda
CrnicInstitute for Down Syndrome, Aurora, CO

This workshop will describe the role of a DS registry, research database and biobank, and explain the importance of all three of
these. Representatives from The Linda CrnicInstitute for DS (LCI) at the University of Colorado will discuss how this information is
requested and collected as well as how it will be used. The LCI is focused on eradicating the medical and cognitive ill effects of DS and is the first organization to include basic research, translational research, clinical research and clinical trials along with clinical care
and advocacy. Time for questions and answers will be allotted.

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06b DS Registry, Research Database and Biobank–Part 2

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11 Promoting Health, Independence, Safety, and Community for Teens and Adults with DS

Brian Chicoine, MD, Medical Director and Dennis McGuire, PhD, Director Psychosocial Services, Adult DS Center of Lutheran General
Hospital, Park Ridge, IL

Find out how to help teens and adults become their own self advocates related to health care issues. This session will reiterate the
association between mental and physical health and discuss treatment options such as the effective use of visual cues. Learn how to promote independence, how to promote success and adaptive skills and how to target specific community weaknesses. Finally participants will learn to differentiate “autistic features” from autism and why sex education is so important. The most recent health and psychosocial findings from the Adult DS Center will also be shared.

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16 How You Can Help Your Child or Young Adult Live a Healthier Life
Suzanne Faber, MPH, Health and Nutrition Coach, mother of a son with DS, Monument, CO

There is more to life than medicine and surgery. Healthy living is not as hard as you think. Why should you care about what your children and young adults eat? What does “whole food nutrition” really mean? How can you encourage healthier eating and exercise habits? How can I learn the “NO -NO’s” and recipes for gluten free eating, snacks and meal plans? Attend this fun, interactive workshop to find the answers to these questions and more.

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17 The Importance of Optimal Sensory Functions with Focus on Vision and Hearing in Persons with DS
Siegfried Pueschel, MD, PhD, JD, MPH, Professor of Pediatrics, Brown University, The Alpert Medical School, father of a son with
DS, Providence, RI

This presentation will highlight the significance of the sensory functions in persons with DS. Initially the external features of the eye and the various ocular disorders observed in many individuals with DS will be described. Then the otology concerns will be discussed, in particular, changes of the eardrum, infections, fluid accumulation and anomalies of the small bones in the middle ear that often will cause conductive hearing loss. Also, several of the inner ear problems that may lead to sensory-neural hearing impairment will be highlighted. Particular emphasis will be on visual and auditory processing and the educational implications in children with DS. Our detailed studies indicate that our children will benefit from teaching strategies that take into account the strength of visual processing modalities in persons with DS.

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22 Teaching Strategies for Supporting Healthy Sexuality
Terri Couwenhoven, MS, AASECT certified Sex Educator, Sexuality Consultant, TC Services, mother of a daughter with DS,
Port Washington, WI

This workshop is designed to help parents understand the critical roles they play in helping their children, teens, and adults become sexually healthy adults. An emphasis will be placed on teaching strategies (how to teach) and key foundational concepts (what to teach) that support healthy sexuality. Practical ideas for teaching and resources for all ages will be shared.

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31 Not Just Baby Teeth! Oral Health Care for Individuals with DS
LaQuiaA. Walker, DDS, MPH, Clinical Assistant Professor of Pediatric Dentistry, Indiana University School of Dentistry/Riley
Hospital for Children, Indianapolis, IN

Oral health care in children for any parent can be challenging, and oral health care for children with special health care needs can provide its own set of challenges. However, these can easily be conquered by any pediatric dentist. The audience will be advised as to the various dental characteristics that can be present in children born with DS, what is necessary to maintain optimal oral health care, long term outcomes, and why children with DS should be seen by a pediatric dentist.

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33 Keeping Children and Adolescents with DS Healthy: All the Medical Updates that Parents Need to Know
Siegfried Pueschel, M.D., Ph.D., J.D., M.P.H., Professor of Pediatrics, Brown University Medical School, father of a son with
DS, Providence, RI

Many persons with DS may have difficulties freeing themselves from the role of the child and they may not be fully equipped yet to assume the responsibility of a mature adult. Frequently, people with DS have most of the physical attributes of typical adolescents, but they often lack the cognitive and behavioral capabilities to cope with the demands of the environment and their own desire for independence. This workshop will address the psychological challenges of transition from childhood to adulthood and present strategies to improve the process.

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43 DS Medical Clinic Experience: Perspective on Current Diagnostic Challenges
Fran Hickey, MD, Director, Anna and John J SieCenter for Down Syndrome, Denver Children’s Hospital, father of a son with DS, Aurora,
CO

This workshop will discuss why the coordination of care can improve the health of children with DS and how this happens at DS Clinics
around the world. Attendees will be provided an up-to-date assessment of the DS Medical Guidelines from a best practice and evidence-based perspective, and will participate in discussions on recent findings that the care of children with DS indicate a need for more in depth evaluation in the areas of sleep apnea, pulmonary hypertension, feeding problems, immune deficits and pulmonary issues. Current controversies surrounding medical and prenatal issues will also be presented for discussion.

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50a Perspectives on Sleep and Mental Health Function in Adolescents & Adults –Part 1
George T. Capone, MD, Director, DS Clinic, Kennedy Krieger Institute, NDSC Board Member, Baltimore, MD

While there is still much to learn about the neurobiology of DS, several lines of research suggest that brain function is more
vulnerable to impairment in persons with this condition. Stressful psychological and social circumstances are also more likely to trigger
mental health changes in vulnerable individuals. Obstructive sleep apnea may mimic or complicate symptoms of mental health
condition. Pharmacologic therapies are being used for a variety of neurobehavioral conditions including: Depression, Anxiety,
psychotic-like features and Obsessive-Compulsive Disorders. This workshop will explain that together with behavior management,
counseling, and treatment of sleep disorders, medications may be helpful in reducing specific symptoms and maladaptive behaviors that can interfere with optimal function and quality of life.

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50b Perspectives on Sleep and Mental Health Function in Adolescents & Adults –Part 2

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